The end of life

The nurse frequently plays an important role in caring for patients at the end of life whether, for instance, in the area of palliative care and the hospice movement or in the intensive care unit. Many difficult issues arise at the end of life. A patient who is terminally ill and who is in considerable pain may tell the nurse that he wants to die. What should the nurse do? The midwife presents a mother with a child who is severely handicapped and the mother screams for the child to be taken away from her. How far is the medical team required to keep that child alive? A young man is killed in a road accident, and the man’s father approaches the nurse for advice as to whether his son’s organs could be used for transplantation. While the nurse may be the primary carer and required to take primary responsibility at the end of life, in many situations s/he will be acting as part of a treatment team. This area also gives rise to a number of difficult issues for the nurse as patient advocate.

This chapter considers a number of important legal questions at the end of life. It begins by examining the approach taken in English law to issues of active and passive termination of life. There is much discussion as to whether there is a ‘right to die’. As will be seen, in English law there is only a right in the sense that a patient can choose to end his or her own life – English law does not sanction active euthanasia, though in certain situations withdrawal of treatment is lawful. The second section considers the definition of death. In the final section the legal regulation of organ transplantation is examined and some proposals for law reform are considered.

ENDING LIFE – CRIMINAL LIABILITY

A seriously ill patient may plead with a nurse that he has suffered enough and that he wants someone to ‘put him out of his misery’. What action should the nurse take?

However grave his agony, if the nurse complies s/he may be prosecuted for murder.

English law does not recognise active euthanasia. In R v. Carr (Sunday Times, 30 November 1986) Dr Carr had injected a massive dose of phenobarbital (phenobarbitone) into a patient with inoperable lung cancer. The judge, Mars J., emphasised that every patient was entitled to every hour that God had given him, however seriously ill that patient might be. The jury eventually acquitted Dr Carr.

However, in 1992 Dr Cox was prosecuted and convicted of attempted murder (The Times, 22 September 1992). (He was not charged with murder because, at the time of the investigation, the body of the alleged victim had been cremated and thus the exact cause of death could not be established.) Dr Cox had been treating a 70-year-old woman terminally ill with rheumatoid arthritis and also suffering from gastric ulcers, gangrene and pressure sores. She expressed a wish to die. When repeated doses of heroin did not ease her agony, Dr Cox gave her a dose of potassium chloride – a poison. Dr Cox was convicted and sentenced to a year’s imprisonment suspended for 12 months. Dr David Moor was charged with the murder of an 85-year-old retired ambulanceman, George Liddell, in July 1997 (British Medical Journal, 1999a and British Medical Journal, 1999b). It was alleged that he had caused the death through the administration of a large dose of morphine. In a TV interview Dr Moor had said that he had been involved in helping patients to die. He had stated that he ‘would be very surprised if I had to defend myself in court’. At the trial Mr Liddell’s relatives spoke up in support of the doctor. His 66-year-old son said at the trial: ‘When I eased him forward he started to cry. It was a long and protracted cry. This was more than I could stand. I have never heard anything like it before.’ Dr Moor was acquitted. The judge told the jury that ‘You may consider it a great irony that a doctor who goes out of his way to care for George Liddell ends up facing the charge he does’.

In R v. Arthur (The Times, 5 November 1981) the non-treatment of an infant resulted in a criminal prosecution. A baby, John Pearson, was born with Down’s syndrome but apparently suffering no other complications. Dr Arthur, a paediatrician caring for the child, wrote in the notes, ‘Parents do not wish it to survive, nursing care only,’ and he prescribed a strong pain killing drug, DF118 – a drug not normally given to infants. The baby died a few hours later. Dr Arthur was charged with murder but this was later reduced to a charge of attempted murder. While he was eventually acquitted, the case left open many difficult issues as to what care a child must be given and whether the health-care professional could cease treatment if it is believed that further care is hopeless. The judge in R v. Arthur described the doctor’s conduct as being a ‘holding operation’. However, it has been suggested that the administration of the drug DF118 – an appetite suppressant – amounted to a positive act. This case must now be considered in the light of the Bland decision, where the court indicated that a decision to cease life-sustaining treatment will not necessarily give rise to criminal liability (see below).

Generally, there will only be liability in criminal law where a nurse or doctor has undertaken a positive action. The law does not usually impose liability for omissions. Nonetheless, as will be seen below, there may on occasions be only a narrow line between these two categories.

The nurse as whistleblower where a doctor has deliberately ended a patient’s life

A nurse strongly suspects that that a doctor has deliberately ended the life of an elderly patient on her ward. What should the nurse do?

In two cases in which doctors were prosecuted for allegedly ending the life of the patient, the prosecutions followed action taken by the nursing staff. Dr Arthur was prosecuted after a nurse who was a member of a pro-life organisation made a report. Dr Cox’s prosecution followed a report made by a nurse, Sister Hart, regarding his conduct. She stated that she was required by the then United Kingdom Central Council for Nursing, Midwifery and Health Visiting (UKCC) code to speak out. The nurse may be subject to disciplinary proceedings if she fails to report such an incident (Fletcher et al 1995, p. 210). Today the nurse is also given some statutory protection under the Public Interest Disclosure Act 1998 (see Ch. 7).

What should a nurse do if, as in the case of Sister Hart, she knows that the patient’s life has been ended but that the patient expressed a wish to die? Does the duty that the nurse owes to the patient mean that s/he should take into account the fact that this patient had expressed a wish to die? While the nurse is obliged to act in the patient’s interests, it must be the case that the nurse should be prepared to report what is a serious breach of criminal law.

Parental obligations to their children

The law places parents under particular obligations in relation to the care of their children and holds them accountable not only for their actions but also for their omissions. If parents, perhaps motivated by some personal ethical belief, fail to seek medical care for a gravely ill child and as a result the child dies, they may be prosecuted under s1 of the Children and Young Persons Act 1933, which makes it an offence to neglect the care of the child. A prosecution may also be brought for murder or manslaughter. In R v. Senior ([1899] 1 QB 283), the parents were members of a religious sect that objected to the use of medical assistance and medicines. Their child fell ill but they did not seek medical help. The child died of diarrhoea and pneumonia. Evidence was given to the effect that had the child received medical treatment then she would probably have lived. Although no medical care had been given, the child had been generally well treated. It was held that the parents’ actions amounted to neglect under section 1 of the Prevention of Cruelty to Children Act 1896 – the statutory predecessor to the 1933 Act, which provided that: ‘If any person… who has the custody, charge or care of a child… wilfully neglects… such child in a manner likely to cause such child injury to its health that person shall be guilty of a misdemeanour’.

In this case the parents were found guilty of manslaughter because their actions had caused or accelerated the child’s death. But, more recently, the courts have held that neglect by itself will not necessarily mean that a prosecution for manslaughter will succeed (R v. Lowe [1973] QB 70). However, in 1993, parents who believed in homeopathic remedies and who failed to seek conventional medical help for their child, who subsequently died, were convicted of manslaughter (The Independent, 29 October 1993).

Administration of pain-killing drugs

The nurse charged with ending the life of a suffering patient cannot plead that this was a ‘mercy killing’. No such defence is recognised in English law. But, in some situations, administration of strong pain-killing drugs is justifiable even though repeated doses will, over time, have the effect of cutting short the patient’s life. In R v. Bodkin Adams, Dr Bodkin Adams was prosecuted for murder ([1957] Criminal Law Review 365). Dr Adams had cared for many elderly patients and had been a beneficiary in the wills of a number of those patients. One 81-year-old widow who had suffered a stroke was prescribed heroin and morphia by Dr Adams and later died. Dr Adams was named as a beneficiary under her will. At the trial the judge, Devlin J., said that there was no special defence of mercy killing. But a doctor was entitled to do all that was proper and necessary to relieve his patient’s suffering, even if the measures used had the effect of incidentally shortening that patient’s life. Brazier (2003, p 441) has stated that: ‘This analysis introduces into the law the double-effect principle much debated in philosophical circles, whereby if an act has one of two inevitable consequences, one good and one evil, the act may be morally acceptable in certain circumstances.’

The doctrine of double effect has been used in the context of abortion. The approach taken in R v. Bodkin Adams has been questioned. In evidence to the House of Lords Select Committee on Euthanasia, the UKCC (House of Lords Select Committee on Medical Ethics 1994) commented that: ‘to prohibit euthanasia… yet permit the use of narcotics to alleviate pain even at doses which will dramatically shorten life or even bring it to a close within a very short period, is no longer a sustainable position’.

Reg Pyne, former assistant registrar of the UKCC, suggested that nurses generally saw the doctrine of double effect as hypocritical (House of Lords Select Committee on Medical Ethics 21–4, 1994). The first duty of the nurse and other health care professionals is to care for the patient. A decision to administer strong pain killing drugs is not to be taken lightly. However, if that decision is made and the incidental effect is that a patient’s lifespan is reduced then, at present in English law, that will not amount to murder. The status of the double-effect doctrine has now been questioned following the decision of the House of Lords in R v. Woolin ([1999] AC 82). There it was stated that ‘intention’ should be assessed in considering whether death was a ‘reasonably foreseeable consequence’ of the action. An action was regarded as intentional if the actor was ‘virtually certain it would occur’, which would suggest that the double-effect doctrine would not be applicable in the context of pain relief because it can be argued that when the pain relief is increased it is virtually certain that death will result. The legal position remains uncertain, although it was considered in Re A (children) (conjoined twins: surgical separation) ([2001] Fam 147) where Ward L.J. noted the difficulty with Woolin while suggesting that the doctrine might be applicable in the case of the administration of pain-killers to deal with extreme pain (see further discussion of this case in Ch. 6).

Suicide

While euthanasia is unlawful, a patient may take his/her own life. Suicide has not been a crime in this country since the Suicide Act 1961 came into force. As noted in Chapter 5, a patient may refuse life-saving treatment, and indeed to treat a patient who has refused such treatment without his/her consent may lead to an action in the tort of battery and possibly to a criminal prosecution. But if the patient asks a nurse to bring some lethal drug and to sit with her/him while s/he dies, the nurse must not do so. Section 2(1) of the Suicide Act 1961 provides that assisting suicide is an offence. To establish a prosecution it must be shown that the defendant knew that the person was intending to commit suicide, assented to this and encouraged them in their attempt (AG v. Able [1984] 1 All ER 277).

One interesting issue is the extent to which section 2 of the Suicide Act could be seen as contravening fundamental respect for human rights and contravening the Human Rights Act 1998 (McHale & Gallagher 2004). A human rights challenge was brought in relation to section 2 in the House of Lords and ultimately in the European Court of Human Rights in the case of R (on the application of Pretty) v. DPP ([2002] 1 All ER 1). Mrs Dianne Pretty was 42 years old and was suffering from a degenerative condition, motor neurone disease. She was confined to a wheelchair and was paralysed from the waist down. Unable to take her own life she asked the Director of Public Prosecutions (DPP) for an assurance that if her husband assisted her to die he would not be prosecuted. The DPP refused to provide this assurance. She challenged the DPP’s decision and also argued that section 2(1) of the Suicide Act 1961 infringed the European Convention on Human Rights as incorporated in the Human Rights Act 1998. The action was rejected at first instance in the Divisional Court. On appeal to the House of Lords, three issues were raised: first, did the DPP have the power to undertake not to prosecute in advance of a proposed assistance in suicide? Second, if he did have that power, taking into account Articles 2, 3, 8, 9 and 14 of the European Convention on Human Rights was he required not to prosecute? Third, if not, was section 2(1) of the Suicide Act 1961 incompatible with Articles 2, 3, 8, 9 and 14 of the European Convention on Human Rights?

Mrs Pretty’s action failed in the House of Lords. Her counsel argued that Article 2, the right to life, also included her right to determine when her life should come to an end. This was, however, rejected in the House of Lords. Their Lordships held that the right to life did not extend to a right to self-determination in relation to a person’s own life and death. Second, it was argued that to deny Mrs Pretty assistance in dying would be to contravene Article 3 – the prohibition on torture and inhuman and degrading treatment. However, the House of Lords held that Article 3 did not impose obligations on the UK such that they were require to ensure assistance in dying for a competent, terminally ill person who is unable to end his/her own life. Article 8, the right to privacy, was also argued in the context that there was a right to autonomy and that this included a guarantee as to when to choose to die. This was rejected by the House of Lords. First it was held that, while Article 8 prohibited interference with the manner in which a person conducts their life, it did not relate to the manner in which they wanted to die. Moreover, even had Article 8 been applicable, arguments of public policy including protection for the elderly and vulnerable would preclude its application. An argument that Article 9, freedom of conscience and religious belief, would apply was also rejected by the House of Lords. It was held that Article 9 did not allow Mrs Pretty to manifest her belief in assisted suicide by being given assistance in ending her own life. Finally, it was argued that Article 14, the prohibition on discrimination, was applicable. It was argued that Mrs Pretty was discriminated against because she was unable to end her own life and, while an able-bodied person could end his/her own life by committing suicide, Mrs Pretty was unable to do so. However this claim too was rejected because it was held that Article 14 could not operate on its own and only in conjunction with other rights and that, as none of the other Articles had been violated, thus an Article 14 claim would not be applicable.

Mrs Pretty continued her legal fight before the European Court of Human Rights (Pretty v. UK [2002] 2 FCR 97). There she also failed. In contrast to the House of Lords, the ECHR was prepared to hold that Article 8 was engaged. They found that decisions concerning the nature and time of death were indeed matters that fell within Article 8 of the European Convention on Human Rights. However, they nonetheless went on to find that any infringement of Article 8 was justifiable. Article 8 rights were qualified in a situation in which the limitation was ‘necessary in a democratic society’ in a situation where this was for legitimate reasons for the objectives of the legislature and the state was given a ‘margin of appreciation’. Here the law prohibiting assistance in suicide was justifiable because it safeguarded the position of the vulnerable in society. Mrs Pretty died of natural causes in a hospice on 11 May 2002 after the ECHR had delivered its ruling. However, the debate as to whether the law should allow assistance in dying still continues, as we shall see below.

Refusing treatment

In the same period in which Dianne Pretty’s case was being heard before the House of Lords and ECHR the English courts were faced by another case of a woman who wanted to end her own life – the case that came to be known as that of ‘Ms B’. (Re B (adult: refusal of medical treatment) [2002] 2 All ER 449.). Ms B was quadriplegic. She was supported on a ventilator. She wanted the ventilator support withdrawn. The hospital refused to accede to her wishes. She went to court. Ultimately her claim was successful. She was held to have decision-making capacity and she thus had a right to refuse treatment – which included the right to refuse ventilation. Nominal damages were awarded against the hospital for continuing to treat her. Subsequently the ventilator support was removed and she died. This case has been juxtaposed with Pretty. Some commentators have seen this as an anomalous position. The cases can legally be distinguished in that Mrs Pretty would have required positive assistance to end her life whereas in the case of Ms B the medical staff would ‘simply’ be withdrawing ‘treatment’. As Singer noted, although the cases were legally distinguishable,

“We have arrived at the absurd situation where a paralysed woman can choose to die when she wants if her condition means that she needs some form of medical treatment to survive, whereas another paralysed woman cannot choose to die when or in the manner she wants because there is no medical treatment keeping her alive in such a way that if it were withdrawn she would have a humane and dignified death.

Singer 2002

But is this an absurd situation – the fact that the law allows an individual to refuse treatment regardless of the consequences while at the same time it does not sanction euthanasia? That of course raises the question: Should we take that step and legalise euthanasia?

Should euthanasia be legalised?

As with abortion, euthanasia is an exceedingly emotive subject (Dworkin 1993). It has been argued that recognition of active voluntary euthanasia is simply a logical extension of the right to commit suicide, and that it is part of giving respect to the autonomy of the individual. Furthermore, it has been suggested that the present position, which sanctions the withdrawal of treatment while at the same time rejecting active euthanasia, is inconsistent and illogical. A number of unsuccessful attempts have been made over the years to legalise euthanasia in the UK. In other jurisdictions legislation has been introduced that has sanctioned some medical assistance in dying, although not without much controversy and debate. In Australia, the Northern Territory passed the Rights of the Terminally Ill Act 1995. This provided that a person could request assistance to terminate life. The request was to be voluntary, the patient must be of sound mind and over 18 and s/he had to be suffering from an illness that the medical practitioner believed would result in the death of the patient. The assessment of the need for euthanasia was to be confirmed by a second medical practitioner. The request was not to be effective if there were medically acceptable palliative care options. The legislation required notification of the criteria under the statute. During the period in which the Act was in force seven patients used the Act and four died under its provisions (British Medical Journal 1998). This statute proved controversial, was the subject of challenge in the Australian Federation and was struck down by Parliament in 1997. In the USA there was extensive media debate over the actions of Dr Jack Kevorkian in assisting patients to die (Brody 1999). The Oregon Death with Dignity Act 1997 allowed doctors to prescribe patients lethal drugs for self-medication. This statute was the subject of much heated debate. Finally the Pain Relief Promotion Act was passed in 1999. This had the effect that federally controlled substances – including morphine – could not be used for assistance in suicide and has had the effect that the Death with Dignity Act is ineffective.

In the Netherlands, while euthanasia itself was not recognised there was a policy of non-prosecution of doctors who followed a series of guidelines and also reported an assisted death to a regional committee comprised of doctors, lawyers and ethicists. Recently, legislation was passed giving legal effect to the existing position and legitimising assistance in dying. It came into force in October 2001 (De Haan 2002). The Termination of Life on Request and Assisted Review Procedure Act now provides that it is not a crime for a doctor to terminate the life of another person on their request if certain criteria are complied with. The doctor must satisfy a special review committee, set up on a regional basis, that the patient had made a voluntary and well-considered request, that he is convinced that the patient was suffering unbearably and hopelessly, that he had informed the patient about his situation and the prospect for improvement; that both he and the patient were agreed that the patient’s condition was hopeless, that he had consulted one other independent doctor and that he has terminated life with all due care and attention. This law also applies to children. Persons over 16 may take the decision themselves. Those between 12 and 15 can seek euthanasia but the doctor must only act with parental consent. The doctor who administers euthanasia is required to inform the regional pathologist and must then report, without delay, to the regional review committee in his district. The task of the committee is to see whether the doctor has fulfilled the ‘due care’ criteria. Now the committee only has to send the case to the prosecutors if it believes that the criteria have not been satisfied.

The Netherlands approach was followed by similar legislation in Belgium in 2002. This applies to those who are conscious and who have an incurable illness. In contrast to the Netherlands, this legislation only applies to those persons over 18. In contrast to the Netherlands, each euthanasia case has to be reported to a national committee (Adams & Nys 2003). In recent years there has been some evidence of euthanasia tourism, with UK citizens travelling to Switzerland to receive assistance in dying. In January 2003 Reginald Crew, a 74-year-old patient with advanced motor neurone disease travelled with his wife and daughter to Zurich and ended his life by taking a drink laced with barbiturates (British Medical Journal 2003). In December 2004 a 65-year-old British woman with a degenerative brain disease, known only as Mrs Z committed suicide in a Zurich clinic after a High Court judge refused to intervene to stop her husband taking her abroad (British Medical Journal 2004; Re Z (An adult’s capacity) [2004] EWMC 2817). Here the law limits those situations in which euthanasia is a crime. Thus, in contrast to the jurisdictions already discussed, life may be ended without the involvement of a doctor (Hurst & Mauron 2003). Article 115 of the Swiss penal code provides that assisting suicide is only a crime if the motive is selfish.

While it has been argued that recognition of voluntary euthanasia is something that accords respect to the autonomy of the individual patient, nevertheless, some strong voices have been raised in dissent. One fear is that of the ‘slippery slope’. It is argued that it is easy to ‘slip’ from recognition of voluntary active euthanasia to involuntary euthanasia undertaken without an individual’s consent, for convenience or other purposes. Critics of euthanasia point to the experience in the Netherlands, where claims have been made that procedures have not been complied with and that abuses have occurred (Keown 1991). The ‘slippery slope’ argument was one factor that influenced the Select Committee of the House of Lords to reject the introduction of euthanasia legislation in the UK (House of Lords Select Committee on Medical Ethics 1994). A further difficulty is, who would administer euthanasia? Should it be the same persons who normally care for patients? Were euthanasia to be introduced it would have considerable implications for the role of the nurse.